New here & just trying to figure out what the best options are for my daughter. Help

[Pooka1]

No Elysia was about 11 when she had the first surgery. She had all hooks, no screws. That situation might be ripe for crankshafting.

I was wrong. She had just turned 14...

Elysia 16 in Feb 2010
Sydney - Australia
Feb 2008 Fused T5-L1 and 5 ribs removed.
Dec 2009 - Crankshafting
Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

I hope she is doing well.

ETA: Though she had just turned 14, she probably had a very low Risser. I don't recall.

[rohrer01]

The X-ray in the video doesn't look all that great to me. The implants look like they had already started to re-rotate. The fact that one shoulder ended up way higher than the other after surgery should have been a huge red flag.

Regarding crankshafting, I haven't done much reading, but I think crankshafting was really only an issue with very young kids. I'm not sure how old Sierra is, but she looked older than 12 to me (although I'm a very bad judge of age).

I was mainly looking at her before and afters and not the x-rays. I guess I wouldn't expect perfect symmetry with the shoulders or any other part considering how she was before. I thought she looked much better and then later on, her rib hump became prominent again. I don't know anything about hardware or what a "good" hardware placement looks like. I'm just a layman. Anyway maybe her mom can come up with some questions even based on what the average person like me observes.

[walid]

Just keep on keeping on and know that the answers are there when you need them. Sierra is lucky to have you as her mom. Shriner's is fantastic; hope you can see them soon. Seems you have lots of experts here too ... everyone is so full of wisdom. Love it!! Cheers.

[Sierras Mom]

How old was your daughter when she had her first surgery, which looked successful? If she wasn't skeletally mature, which it looks like she may not have been, I'm wondering if she isn't suffering from the crankshaft phenomenon, where the spine continues to grow, but the rods won't allow it to grow longer, therefore it twists instead. That's my best guess. I hope Shriner's can help. From what I've been reading on the board they seem to get kids in rather quickly as compared to some private practices. Whatever the case, I wish you both all the best.

Hello, She was 14 when she had her 2 first surgeries and then she had her 3rd one the very next year. She has had 3 open heart surgeries as well which I have
heard can cause the spine to turn as well. I have not heard of crankshaft phenomenon. When she had the first surgery she gain an inch and a half but she has
now lost that.

Thank you for the info!

Kellie

[Sierras Mom]

I am so sorry it took me so long to reply my life just turned upside down...of course when it rains, it pours and then life goes on again. As far as all of your
comments let me say thank you for being so kind as to offer your advice and support it truly means alot to me.

Elisa, your child's back looks amazing!!
Pooka1, Thank yo for the compliment, I think she's beautiful too but I am partial...lol I have to be honest here and tell you that I am not sure what they put in her back. It was our understanding that He was putting screws in her back. I didn't even know they put hooks in the back, Dr. Johnson was not the most talkative
man and when he did speak, it was while looking at us and dictating into his recorder really fast. I probably missed it. Since you have mentioned it though and I
have compared her back to others, it doesn't look like she has screws to me at all. It also appears to me that compared to other's there wasn't even enough
"screws" or "hooks" put in her back to begin with to keep the curve straight.

As far as how old she was, looking back, I realize that she was 13 not 14 like I told Rorher(sp?). She had one surgery April 28th, 2008 to remove a rib and disc.
Then she had a second one on May 5th to fuse her back. She turned 14 in August. Then she had this last surgery in Oct. 2010 to remove the rods and Dr. Puno put a half rod in because she was curving above the other one. Now, my daughter and I are having an argument about how long the rod was, she says it went from T3 to t4 which doesn't sound right to me...lol As a side note, she couldn't stand the pain of being in school all day anymore so now a teacher comes to our home to teach her. Anyway she is sitting at one end of the table and me at the other and we are driving each other crazy...lol She's a good sport through all
of this, I don't know what I would do without her. So getting back to this last surgery I am not for sure how long the bar is.

Oh and to update everyone, karen Brendell from Shriner's called around the first of November and told me that Sierra was denied surgery. According to her,
Sierra's surgery would be too "medically involved to receive care there" because they do not have an ICU unit. I was truly floored as well as disheartened. Honestly though, how does a hospital not have an ICU unit? And I've seen some of the pictures of their work and some of those backs looked way worse than Sierra's so I have to look elsewhere. Fortunately for Sierra, being out of school and being able to rest between doing her work has helped ease her pain so we have alittle more time but still I am so disappointed for her.

I have a question for you all......Which is better, and Orthopedic spine surgeon or a neurosurgeon who has specialize in Spine surgery?

Susie Bee - thank you for the suggestion I may pm Aussiemom and pick her brain.

I'm sorry this is so long. I do hope you each have a wonderful evening.

Kellie

[leahdragonfly]

Hi there,

I am sorry to hear you were denied at Shriner's --I have heard of a few kids with complex medical problems being turned away. Curious though, which Shriner's was that?

I would still suggest you get in contact with Janet Cerrone, the PA for spine surgery in Philadelphia. They see all sorts of very complex spine cases, so perhaps they can help your daughter. Janet is also an extremely nice person. Her e-mail is janetcerrone@comcast.net

Good luck,

[rohrer01]

Maybe you need to contact the Shriners in Portland or Seattle. Those two boys are definitely complex surgeries (Elias and Walid). It might just be that particular hospital. Sorry to hear your bad news and that your daughter is in pain.

[Elisa]

Maybe you need to contact the Shriners in Portland or Seattle. Those two boys are definitely complex surgeries (Elias and Walid). It might just be that particular hospital. Sorry to hear your bad news and that your daughter is in pain.

Just to clarify, Walid is at Shriners in Spokane Washington, not Seattle.

The Shriners at Portland doesn't have an ICU either but they do use the ICU if needed at the neighbouring OHSH... they are connected by way of walkways. The other halo boy Ryan, who had anterior surgery (Dr. Krajbich) did spend a night in the ICU. I agree with Gayle (leahdragonfly) contact the person she gave you the email link to.

[mabeckoff]

If you are interested in going to Southern CA, my awesome surgeon said that he would be glad to go over your daughter's case. Let me know

[Sierras Mom]

Hi there,

I am sorry to hear you were denied at Shriner's --I have heard of a few kids with complex medical problems being turned away. Curious though, which Shriner's was that?

I would still suggest you get in contact with Janet Cerrone, the PA for spine surgery in Philadelphia. They see all sorts of very complex spine cases, so perhaps they can help your daughter. Janet is also an extremely nice person. Her e-mail is janetcerrone@comcast.net

Good luck,

Thanks Gayle, I did email her so we will see what happens! She was denied by St. Louis which happen to be the closest for us.

[robinlbe]

to Sierra's mom...
I've just joined the forum and noticed your daughter's surgery was done in L'ville.....I've not heard of your daughter's doctor, but your experience scares me to death. We're brand new to the world of scoli.

my 14. y.o. son was just diagnosed, and we saw Dr. Campbell at the Leatherman Spine Clinic two days ago. He definitely was not knife-happy, for which I am grateful. My son's scoli is congenital, and can not be corrected with a brace, and surgery will be the absolute last resort - and only if the curve gets worse. We go back in three months for more xrays and evaluation. Since he still has quite a bit more growing to do, they are going to keep a close eye on him - but right now the plan will be to fuse him if the curve continues to progress. It's currently at 34 degrees and is in the T4-T5.

Oh, and we live in New Albany.....

[Sierras Mom]

I'm so sorry to hear about your son, this is not a fun journey so my heart is with you. What is his name? I will keep him in my prayers. I personally have not met Dr. Campbell but he did do my sister's surgery and he did a very bad job. He fused her and then she went home an nearly died because he had punctured her
spinal fluid area which caused it to link out in an extremely high rate, she was told had she not come back to the hospital when she did, she would have died.
While the other doctors did come in and apologize profusely, Dr. Campbell refused saying he did nothing wrong. This was some 20 yrs. ago though and maybe it was a different Dr. Campbell, I dunno but when my sister heard I was going with the Leatherman Spine Institute she begged me with tears in her eyes not to
see them. Since Sierra's peditrician said he would take his own child to Dr. Johnson because he was the best I gave in because I thought, "well, this other guy
was probably young and mistakes happen." Probably not my best thought looking back now. Dr. Puno is an excellent doctor, I would recommend him to anyone
but the reason I chose to look elsewhere is because it's not like we can just keep taking her in for repairs when they don't really see the problem, this had to be
fixed by someone with much expertise. I will say that Dr. Puno was trained at Shriner's Twin Cities which gives him an advantage over the other doctors and he
has invented a few pieces that are used in the back. I will also tell you that what he and the other doctors have invented are sold by a company who gives them kickbacks for using their products exclusively. I read this recently on the internet so I would suggest you do lots of research.

What I want to tell you though is that if you could go to a Shriner's hospital with world renowned doctors where all of your child's medical expense was covered wouldn't it be worth it? Not only do they cover the expenses, they will fly you there if it is at a great distance like it is for us. They also have a place for family to stay on campus and discount on food you purchase. I imagine you could go grocery shopping and get some things so the expense there would be limited as well. What I would suggest to you is while your son is not at surgery stage that you start doing research and maybe you could even get a second opinion, maybe even from Shriner's. I know it's hard to think about picking your life up a taking a trip several hundred miles away but in my daughter's case, I just can't see putting her through this over and over again. I do wish you the best of luck and again you have my prayers and friendship. My personal email is:
krnoon1@gmail.com and I am on face book as well under, Kellie Foster Noon.

Take care! Kellie

Oh I forgot to answer your question....I live in Boston, Ky. which is 45 mins. from Louisville. Most of our family live in Louisville though.

to Sierra's mom...
I've just joined the forum and noticed your daughter's surgery was done in L'ville.....I've not heard of your daughter's doctor, but your experience scares me to death. We're brand new to the world of scoli.

my 14. y.o. son was just diagnosed, and we saw Dr. Campbell at the Leatherman Spine Clinic two days ago. He definitely was not knife-happy, for which I am grateful. My son's scoli is congenital, and can not be corrected with a brace, and surgery will be the absolute last resort - and only if the curve gets worse. We go back in three months for more xrays and evaluation. Since he still has quite a bit more growing to do, they are going to keep a close eye on him - but right now the plan will be to fuse him if the curve continues to progress. It's currently at 34 degrees and is in the T4-T5.

Oh, and we live in New Albany.....

[jrnyc]

i would suggest you call Dr Lenke's office and ask
if they will see you...or if they will take a look at your X rays....
Dr Lenke is famous for doing the most difficult of patients....
i think it is important that you start a file on your daughter's medical issues if
you have not done so already....you need to know what kind of hardware she has, etc....
you are her only advocate....any surgeon willing to consider revision surgery will
want to know all the details of what has already been done...
if you have any written reports from her surgery, that would be helpful....
maybe you could start gathering information....if you do not have such info, you
might want to start requesting it...
....you may have to put your requests in
writing, but it is a place to start...and do keep copies of everything!

jess

[Sierras Mom]

Hi Jess,

Thank you for the info, I got every record I could get my hands on and even took pictures of my daughter's back before I shipped the couple pound envelope
off. I had been keeping some stuff already, especially operative reports....etc....It's ashame when you realize just how much the doctors don't tell you that the operative reports do, I have been stunned many times!!

Have a great day!

Kellie

i would suggest you call Dr Lenke's office and ask
if they will see you...or if they will take a look at your X rays....
Dr Lenke is famous for doing the most difficult of patients....
i think it is important that you start a file on your daughter's medical issues if
you have not done so already....you need to know what kind of hardware she has, etc....
you are her only advocate....any surgeon willing to consider revision surgery will
want to know all the details of what has already been done...
if you have any written reports from her surgery, that would be helpful....
maybe you could start gathering information....if you do not have such info, you
might want to start requesting it...
....you may have to put your requests in
writing, but it is a place to start...and do keep copies of everything!

jess

[Sierras Mom]

Good Day Everyone....It has been a great one for us!!

Just got the call awhile ago from Shriner's, Sierra has an appointment on Dec. 15th, with Dr. Samdani at the Philidelpia, PA. location. We are so excited and of course a bit scared too, nothing exciting about another surgery but the thought of them actually helping her is a huge blessing.

So I know you have been there Gayle and I pm'd you but thought I would ask a few questions if anyone might know. So how long does it take to be scheduled for surgery from the time of first appointment? Has anyone stayed in the campus facility they offer for family and if so what's it like, trying to imagine what we are in for I guess.

Of course the big question is, has anyone had or know of someone who had Dr. Samdani? I sure hope he is as good as the lady on the phone told me he was.

This could have not come at a time any sooner to be honest, Sierra has been in so much pain that this week she was in bed for 2 days straight and last week for 3. I cannot stand to see her go through all of this.

I hope everyone had a great Thanksgiving and are ready for Christmas after a horrible day on Black Friday if you went...I did and I've never seen such craziness.....lol

Have a good night.

Kellie